Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “January 29, 2013”

The “Benefits” Of A Union

If you want to start a divisive conversation with anyone, state you opinion on labor unions.  The chasm between supporters and opposition is huge.  There is hardly any acknowledgement of real estate between either side.  You are either for them, or against them.  Both sides often present skewed information to prove their value and refute effectiveness of the other side’s arguments.

I am not going to get into the middle of that discussion either.  I do have an opinion on labor unions, but that is not the purpose of this story or the blog in general.  Instead, I want to talk about one of the good things to come out of union membership.

From the day I was diagnosed with Hodgkin’s Disease, I became a “prisoner” to my current empolyer.  As with many health challenges, once you become a liability with your health, insurance companies do not want you or your premiums that you pay.  While they do pay out claims, they are in the business to make money, to gamble against you and your health.

The first job that I ever had that gave me health benefits was Wagner Appliance Parts, a “family” type business in the Allentown area.  With the help of a good reference, I was hired by Jeff Wagner.  Two years later was when I was diagnosed with my Hodgkin’s.  It was also at that time, that my employer realized what he was not getting for his investment.  Wagner’s was not a union business, so benefits were at the generosity of the Wagner’s.  And for years they felt as if their employees had good health coverage because why would their agent sell them anything less.  But with my diagnosis came a sad realization for Jeff, that our plan had many exemptions and limitations that could have profound impacts on diagnosis and treatments.  The night I told Jeff of my diagnosis, and the doctor’s plans due to my health benefits, is when he called his insurance representative and upgraded our coverage.

For three years following, I was an employer there.  But an opportunity came up to operate my own business/franchise, something that I had been denied in spite of my qualifications, or the fact that management constantly had me training the future managers.  There was going to be one catch.  I would not be offered any benefits because of the prohibitive costs.  But my career had plateaued and this would only be temporary to give myself experience.  Five years went by, had it not been for the HMO my wife had.

A break came when I landed a job with an entirely different company, a major, international firm.  I would be starting as a custodian, the lowest scale of the local union.  But what the union offered in health coverage was more than I could ever have hoped.  The great thing is, it could not be denied.  In the last five years, I have had my share of claims paid and I would have been dropped long ago.  But with this group policy, it cannot happen so I am told.

The economy and the new universal health care are creating issues which my opinions in these matters are not what this post is about, but rather reveal what employers are doing to skirt around having to offer benefits from under-enrollment, cutting hourly workers below full time.  As far as I am concerned, you must fight to keep whatever coverage you currently have if you are happy for it.

Jennifer’s Story

One of the first things that I wanted to do once I was done with my chemotherapy for Hodgkin’s Disease, was to find some way to “give back” to that which saved my life.  I never studied to be an oncologist, so that was out.  The American Cancer Society had been rolling out a relatively new program called Cansurmount.  Cansurmount was a “peer to peer” program that matched cancer patients by type of cancer as well as other factors such as age and gender.  The goal was to help patients deal with their illness by realizing that others had gone through it before themselves.  There was training involved which mostly involved learning to listen, listen real well.  Patients needed two things, one more so than the other.  The thing that cancer patients needed was to be heard by someone who understood what they were going through.  I know I personally dislike the expression “I know what you must be going through.”  No, you do not.  The second thing needed, is empathy, to be told the way that they feel is normal, and to be inspired by me, an actual survivor.

Having completed the training course, I was good to go.  In just a few short days, I had been given my first patient.  Her name was Jennifer, a 14 year-old student with Hodgkin’s Disease just like myself.  As I read through the profile, I thought to myself, “this won’t be bad at all”.  But then I got to the prognosis, which I was not prepared for, “terminal.”  I could not believe it.  Right from the gate, I was given a child who had nearly the same cancer as me, only she was going to die from it.  I had barely come to terms with my Hodgkin’s, and only recently celebrated my remission, but had to reign it in when I met with Jennifer and her family.

I met with Jennifer’s mother first to tell her what Cansurmount was all about, and then, who I was and what I had been through.  She never did ask me, how soon my Hodgkin’s Disease had been discovered to allow me to go into remission, when her daughter, only aged 14, would die from it?  There was not one visit that did not occur when the thought “why her, and not me?” did not go through my head, or wonder if her mother felt that way.  This is called “Survivor Guilt”.  It is something that I have carried with me over 22 years now.

My visits were weekly and lasted anywhere between a half hour to an hour.  Most of the times, it was Jennifer’s mother asking me questions, still looking for any kind of hope that things would turn out differently for her daughter.  Jennifer barely said more than “Hi” to me.  We just sat there, watching whatever television show she had on at the time.  This routine would go on for months.  At times, I would forget, that Jennifer was not going to survive.  She had not been told of her worsening condition.  She was only told of things when she was going through treatments or doctor appointments. 

She would celebrate her 15th and 16th birtdays.  For her condition to be terminal, this was taking a long time.  But there are different types of Hodgkin’s Disease and there are different types of growth.  Jennifer’s was the slower growing type.  For Jennifer’s 16th birthday, she had made a very unusual request.  Though she had not been in school for a very long time, she longed for her vo-tech education.  This was the year she was supposed to learn to drive the fork-lift.  I do not recall her talking about her prom as more treatments were beginning to take their tole on Jennifer.

By Jennifer’s 17th birthday, her condition worsened dramatically.  The family made the decision to bring hospice in and asked for my help to arrange this.  After all this time, all the visits, I was finally making a contribution to Jennifer’s care.  And then it was time to tell Jennifer that she was dying.  Her family broke the news to her, while I just sat there, tears welling up.  Jennifer talked about wanting to graduate from high school as the last thing she wanted to do if she could.  There was a brief moment of silence, and I took that opportunity to tell Jennifer and her family about the hospice program, the representative that would be coming, and what to expect from them.  In all the visits, Jennifer barely spoke to me, at least nothing that would have confirmed that my visits with her were nothing more than taking space in her living room, which now its furniture included a hospital bed.

“You’ll still come and visit with me won’t you?”  At that moment, I could no longer hold back the tears.  I was certain that I had meant nothing to Jennifer and here she was concerned that I would stop visiting her just because hospice would be taking over.  I promised I would stay with her.  A month later, Jennifer got a surprise, it had been arranged for Jennifer to graduate from high school, ceremony and all.  It was a moment that I will never forget, because with her fate just before her, she had given a smile that would last forever.

Soon after, her condition worsened and had to be hospitalized.  And then she let go.  Her pain and suffering were over, but it was on her terms.  She got to do the few things that she wanted to do before she passed.  Jennifer touched so many lives and is someone I have never forgotten.

I was dealing with several other patients at the time of Jennifer’s passing, but took her death so hard, that I needed to ask for some time to deal with my grief.  It would be unfair to my other patients, and I defnitely did not want my actions reflecting on them.

I returned to Cansurmount for several more years, and then the internet came along, and found that I could help so many more people, which is where I am today.  I participate in several blogs and internet support groups, have given survivor speeches, and held many one-on-one conversations with people.  I am hoping to see the day when all cancers are cured, but for now, we cannot forget about those who still must fight and make sure we meet their needs.

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